Primary Immunodeficiency

Super Seed by Melanie R.

Past dunes,
bazaars of market spice
the planter fared for gift of life.
Past storms,
crossed marsh,
contended seas.
The search consumed to supersede.

The planter’s hope on path’s unknown.
Walked thorn in side o’er fiery coals.
A strength of Will,
a test of faith,
So worth the trek,
no time to waste.

So deep within the earth’s crevasse
Super seed was rare to find-
The planter brave to travel there.
lamp by feet to guide.

The quest consumed
as passion flared
Find super seed,
then plant with care.

Hidden by faith,
Blinded by source.
The planter prevailed;
sailed on to the course.

Traversed below the surface,
a suffocating search
Many were called before him,
and some have not returned.

Time went by as darkness pressed,
and time to sow was ticking;
the seed then found amidst the dead
a covenant seed of picking.

Planter knelt on all the darkness
and placed his hands in dirt,
Brought them both together
prayed through all the hurt.

Tilled soil with only finger
Aerated when in heart,
The neck of fate,
with open hand
Let go of all the hurt.

So on your quest,
remember this,
A remnant lost in fear.
Now plant your seed,
you’re alive again;
watered by the tears.

To this day you’ll find it,
full grown to supersede.
Flourishes beside hope’s gate,
the seed became a tree!

#MitochondrialDisease #PrimaryImmunodeficiency #IrritableBowelSyndromeIBS #RheumatoidArthritis #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #RareDisease #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain

Mercy New by Melanie R.

As You wake me in the night,
to speak to me as I write,

brightness covers darkness,
Lord, we thank You for your light.

Each morning
mercy new,
the dawning break of day.

The bread was broken for us,
to restore Your Mighty Way!

Your returning day approaches,
guidance needed most-

Your light has seen us through it,
Our lampstand; Heavenly Host.

A lighted path before us;
Not lost,
You led the way.

Opened eyes;
burning bright…
we praise Your Holy Name.

Father in Heaven,
The light that guides and shows us the way. Thank you for kindling Your Light of purity and allowing Your divine burning light to be seen. Seen to light the way of our path, to shine our testimony in the midst of great heavy darkness the way The Light of Christ anointed our faith.
One spark lights an entire room. Your mercy is fresh and new each morning as The Light of The World. The Great and Mighty Lampstand of constant presence shining before this world! Your light shines above the darkest shadows and empowers us to have the strength to overcome, as you have overcome every work of darkness! Praise God! Your Holy Light pours wisdom and chases darkness out. Heaven let your light shine down on us! We thank you for bringing mercy, life, and light in each dawn of day.
In Jesus’ glorious name,
Amen.

Psalm 106:1
Praise The Lord! O give thanks for He is good! For His mercy endures forever.

1 Peter 2:10
Once you were not a people, but you are now the people of God,… which had had not obtained mercy, but now have obtained mercy.

The Way, The Truth, and Life!
Shine your light! Give Light!

#RareDisease #sjogrens #MitochondrialDisease #PrimaryImmunodeficiency #ChronicIllness #HypothyroidismUnderactiveThyroidDisease #PosturalOrthostaticTachycardiaSyndrome #ChronicInflammatoryDemyelinatingPolyneuropathy #Dysautonomia #InsideTheMighty #ChronicPain #RheumatoidArthritis

A Heart Set Free by Melanie R.

A great winded rhythm underway; prickled readiness underfoot. A mission called into blended shadows- undulate in shades of smoke as hope glimmers.

Drumming a cleared path of yearning webs for justice. Where a brightened light pierced an open door. Candlelit wonders motion the clouded poufs to view a saved heart…set free.

Chosen and preserved.
A living hope guarded in faith.
Examined, mourned, pressed, scarred, shattered,…repaired;
never faltered, never failed.

Search me, Oh Lord, and know my heart.
Lead me through the everlasting way.
I’ve been tested, and tried…know I am true-know my heart. You are my indwelled heart pounding through our shared domain. Monitor my steadfast rhythm and the intricate design of each ticking; of each pulsed beat transformed by this undeniable salvation.

Echoed chambers of my heart.

Centered rhythm deepest part.

Search me, Lord, and see I’m true-

slated clean-each beat for you.

Five waves count each beat’s refrain, monitored life both joy and pain.
Set each P, Q, R, S, T…
My heart declares my love for thee.

And if one day my chambers still,
my heart set free-
fulfilled Your Will.

Psalm 139:23
Search me Oh God, and know my heart.

Matthew 6:21
For where your treasure is, there your heart will be.

Proverbs 3:5
Trust in The Lord with all your heart, and lean not unto thine own understanding.

The Lord searches the heart.
Give God your whole heart. Stay strong Mighty Warriors!

#ChronicIllness #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Cardiomyopathy #RareDisease #ChronicPain #InsideTheMighty #PrimaryImmunodeficiency #ChronicInflammatoryDemyelinatingPolyneuropathy #RheumatoidArthritis #HypothyroidismUnderactiveThyroidDisease

APRIL IS… National Primary Immunodeficiency Awareness Month. #RareDisease #CommonVariableImmuneDeficiency #PrimaryImmunodeficiency #ChronicIllness #Spoonie

I’ve got all my specialist appointments scheduled for the new year now that my deductible has hopefully been met. Time to start pursuing treatment plans, procedures, diagnoses, etc. It starts all over again. Back on the phone being a secretary. The trips to Atlanta are often extraneous too. It’s exhausting being chronically ill & there’s no paid leave or vacation time from it. I just wish I could escape it all somehow. It feels like everything falls on the patient. I’ve worked very hard organizing a team of Emory doctors so they’ll communicate with one another better over my care. It hasn’t been easy because I’m a uniquely “difficult” case due to my PI or primary immunodeficiency on top of everything else. I can’t just take biologics & steroids all the time because it lowers my ability to fight infections & I’m already prone to them. That’s why I receive monthly plasma infusions. It just makes pursuing my other rare diagnosis that much more difficult since I don’t produce my own antibodies. I need the official diagnoses so I can reapply for SSI again. It’s just so costly being this sick & disabled. I’m over it. How do you bear the burden of it all? I rely so much on my spouse & immediate family for support. I can’t even drive myself anymore. I want my independence & health back. Unfortunately, the older you get the more our immune systems get depleted. I’m determined to continue on fighting & advocating for myself. Thanks for having me in the Mighty community. It means a lot to have a place to come to that understands. #Spoonie #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #RareDisease #Sarcoidosis #Arthritis #CommonVariableImmuneDeficiency #PTSD #MentalHealth #Anxiety #ObsessiveCompulsiveDisorder

Be a lucky charm for the primary immunodeficiency community by donating plasma today! IMMUNE DEFICIENCY FOUNDATION #RareDisease #CommonVariableImmuneDeficiency

An estimated 1 in 2,000 people are diagnosed with a primary immunodeficiency in the United States. This makes PI a #RareDisease . With PI, part of the body’s immune system is missing or doesn’t function.🦓 #RareDisease #ChronicIllness #CommonVariableImmuneDeficiency

I have been chronically ill my entire life. I don’t remember a time when I wasn’t battling some kind of infection. I was born with a rare disease known as primary immunodeficiency or PI for short. More specifically CVID or common variable immune deficiency which usually affects children. I wasn’t diagnose until the age of 28! I receive monthly plasma infusions of Gammagard through a chest port. It helps to maintain my IgG levels since I cannot produce my own antibodies. Basically it just means I’m prone to infections like pneumonia. #piawareness #Showyourstripes #zebrastrong #DonatePlasma #RareDisease #RareDiseaseMonth #InvisibleIllness